Living with FXS: An Examination of Family Occupations

Fragile X Syndrome (FXS) is an X-linked recessive gene mutation and is the most common cause of inherited intellectual and developmental disability (IDD). FXS is also a genetic cause of autism spectrum disorders. Individuals diagnosed with FXS present with behavioral challenges including aggression, cognitive impairments, emotional dysregulation, sensory hyperarousal, and overall adaptive functioning deficits. Families living with FXS experience daily life challenges including going to the grocery store, participating in family outings and attending social events. FXS has an extensive body of literature with a wealth of information on the genetic and medical aspects of the disorder; however FXS has yet to be studied through an occupation centered lens. Therefore, the purpose of this research is to examine the family occupations of those living with FXS. Family occupations are daily lived experiences impacted by FXS which includes child functioning, family life, and engagement within the community. This study utilized interview methods and qualitative analysis to account for parental voice and context. This qualitative research examined family occupations by employing the Person, Environment, Occupation (PEO) theoretical model. Our analysis and results will be represented in a conceptual model for an occupation centered approach to serving families with FXS